Hollywood, Florida — December 12, 2013- People living with inflammatory bowel diseases (IBD) commonly have problems obtaining affordable insurance, among other financial hardships affecting their health and well-being according to research presented at the 2013 Advances in Inflammatory Bowel Diseases, Crohns’ & Colitis Foundation Clinical & Research Conference.
Affected patients and families also face problems affording medications or specialist care, reports the new survey, the first of its kind to focus on the financial impact of IBD. "Our findings show that people living with IBD have more trouble finding insurance, pay higher premiums, and are more likely to have trouble affording routine health and preventive care," comments David T. Rubin of The University of Chicago Medicine and co-chair of CCFA’s Professional Membership Committee.
To evaluate the insurance and financial consequences of IBD, Dr Rubin and colleagues designed a new 76-item questionnaire: the CCFA Access to Care Survey(ACS). The survey was completed by a nationwide sample of approximately 3,800 IBD patients or parents of children with IBD.
The ACS was based in part on the CDC's National Health Interview Survey, an ongoing study monitoring the health of the U.S. population. The researchers compared the ACS responses with publicly available data on responses to similar questions by 34,500 NHIS participants.
About 14 percent of ACS respondents said they had tried to buy private insurance—that is, not through any employer, union, or government program—within the past year. But more than half were rejected for insurance, or paid higher premiums if they were accepted.
"Fifty-four percent of these individuals reported being rejected, with 53 percent reporting higher premiums for available policies," the researchers write. By comparison, eight percent of NHIS participants tried to buy private health insurance—only 8.5 percent were rejected and 14 percent reported paying higher premiums.
Fifty-two percent of ACS respondents said they sometimes could not afford their medications, compared to less than nine percent of NHIS respondents. Thirty percent of patients and families affected by IBD were unable to see a medical specialist because of cost issues, while 22 percent were unable to make recommended follow-up visits.
The ACS respondents also reported difficulties affording dental care (51 percent) and vision care (37 percent). All of these problems were more common than in NHIS participants—suggesting that IBD carries financial hardships that may affect health in other ways, beyond the effects of the disease.
"Our study is the first assessment of the insurance and financial burdens facing IBD patients and families in the United States," Dr. Rubin comments. The results show that, as with other chronic health conditions, patients with IBD have difficulty obtaining health insurance and incur higher medical and related costs.
"Because they have a chronic, incurable disease, patients with IBD have all too often been considered uninsurable," says Dr. Rubin. The researchers hope the situation may improve with the introduction of the Affordable Care Act—under which no one can be turned down for insurance coverage because of a medical condition. Dr. Rubin concludes, "The impact on these findings by the Affordable Care Act and other novel initiatives by the CCFA will be critically important."